By: Sarah Muthoni Gacheru

After nine months waiting in anticipation, all women hope for a healthy child. One they can bring up to be strong enough to stand alone in the world. However every year, thousands of women like me become mothers of handicapped children, most of who need someone to take constant care of them throughout their lives. Have you ever wondered how these mothers struggle to cope both financially and emotionally and fight against drowning in a sea of self-pity and despair? Do you know how they cope in the face of society’s ignorance, cruelty, and prejudice? I hope that my story will give you an insight and that you will be thoughtful, kind and generous to all children with disabilities and to those who have the responsibility of taking care of them. I also hope that my story will encourage others affected. They should know they are not alone and help is available.

Sarah Gacheru and her son Dennis

Dennis was born on 1^st July 1998, through Caesarean Section at the Mater Hospital. He looked perfectly healthy.  None of the doctors and nurses noticed anything unusual about his health by the time we left the hospital.  He was a very beautiful baby. Once a “matatu” conductor amused me when after the vehicle stopped for me and the baby to alight, he said, “Wee mama si unipatie yule mtoi supu twende naye “squad” moja alafu tumrundishe.” (Why don’t you give me the beautiful baby I take a “round” trip with him then I give him back?)

When Dennis was about 10 months old, I started having the nagging feeling that there was something wrong with him. Even though, he was gaining weight normally, he did not respond when spoken to, or smile as other children his age do. He also made some odd repetitive actions. Even by the time he was a year old, he was as yet to start crawling. However, the few people I expressed my reservations to, even the nurses where I attended clinics, thought I was just impatient and assured me he would catch up. I wanted to believe them until my mother shocked me into the reality of the situation. My daughter and Dennis had gone to visit her for two days. When I went to collect them, my mother commented, “Niui mwana waku ni kirimu?”“Do you know your baby is a fool?”  I was quite annoyed with her and said that I did not think he was a fool .My mother insisted. “You say no– he does not say anything, he does not want other children near him. Please don’t get angry. But he is a fool.”

The next day, I took Dennis to see a paediatrician. I expressed my misgivings on his lack of responsiveness and she referred me to an ear, nose and throat (ENT) doctor to have his hearing checked. The ENT doctor said he thought Dennis could not hear and referred me to a company that sells hearing aids. After some expensive tests, they told me that while my son could hear, he needed sound highly magnified. They cleaned out Dennis’s ears saying there was fluid in his eardrums and gave him some medicine to further clear it up. They told me that I should also get him hearing aids for both ears. This they assured me would enable him to hear and he would soon learn to talk. It was December 1999 and Dennis was then one and a half years old. The hearing aids were quite expensive. They cost me about 100,000/-

However, with the help of family members and friends, I was able to purchase them. They however did not help Dennis. They made him very agitated and he was always struggling to take them off.

The doctors then recommended that I take him for speech therapy at Giant’s Hearing Centre. After taking Dennis there twice a week for these sessions for a whole year, the therapist told me that I should try some other place because he had tried and could not do anything with him. He said he thought Dennis could be having another problem which he could not discern.

By this time, Dennis was becoming very hyperactive. On seeing another doctor, he started him on a medicine called Tegretol so that the baby could calm down and learn. However, Tegretol made the child dull, and he would sleep the whole day. The doctor asked me to reduce the dose and increase it progressively. This did not help much.

I was then told about another speech therapist, a Dutch lady called Mrs Rosenstock who used to stay in Karen (and who has now left the country).It was quite a distance from where we were staying and I also learnt that she was quite expensive and charged 3,000/- per session. A good friend offered to take me and pay for the first session. She told me she had fasted and prayed for Dennis’ healing for one week.

After assessing him, Mrs. Rosenstock told me that the boy was “autistic”. This was the first time I had ever heard the term mentioned and she explained that it was a neurological disorder. The lady was very nice. When I told her that I could not afford to come to her for follow up sessions because she was very expensive, she asked me how much I could afford. “2000/- ?” she asked. . I said no. “1,500?” I said no. “Then how much can you afford?” I said 500/-. That is what she charged us even for that first session.

Dennis and I started going to her twice a week for 45 minutes sessions. She would work with him and give us work to do at home. This would entail playing using certain words, sitting on the floor with the Dennis while looking him in the eyes, telling him “This is a cup” and showing it to him. After a while she sent me for a second opinion to Acorn Special School in Lavington. Another good friend took us in her car. She prayed for us before we set off. One of the things she asked God is why the beautiful boy had to wear hearing aids. She said afterwards, “This boy is not going to wear these things!” She knew how the hearing aids were also draining my resources. Dennis would keep throwing them down and they would break. I had to keep on replacing broken parts, the cheapest of which was 2,000/-

When the teachers at Acorn assessed Dennis, they told us that the boy did not need hearing aids. They explained further about autism and that children with the neurological development disorder could hear but did not respond quickly. They can even take half an hour to respond. They advised that because autistic children liked to be by themselves locked in their own worlds, and did not want to play with other children, we had to discourage it and take him to a special school like theirs where he can be with other children so that he could be taught social skills. After discussing the issue over with the speech therapist in Karen, she advised me to pool my resources and send the boy to Acorn since they could take care of his special needs .I agreed and started taking him there.

I had already tried taking Dennis to various preschools near my home in Ongata Rongai. Each time I took him to a new school, he would come back with a letter telling me to go to the school the next day without him. They would then tell me that he was very unruly, running all over the place disturbing everybody and they could not handle him. They would give me back my money and ask me to take him somewhere else. We had already gone to six pre-schools which had all rejected him.

Even after Acorn School kindly agreed to reduce the fees from 62,500/- per term to 30,000 per term, I could ill afford it. In addition to the fees, there was fare form my house which came to at least 400 shillings per day. However during the one year that Dennis attended the school, he improved quite a lot and even got potty trained at four and a half years old. He also started speaking one word.

I then heard that some parents with autistic children had come together and started a special class for them at City Primary School. After enquiries, I placed Dennis there in September 2004.

Even though it was cheaper due to government support, I still had to pay Kshs. 17,500 per term for Dennis (being the parent’s contribution to cater for the therapists, teacher aides, cleaners and also the cooks), in addition to our daily transport and other personal requirements. For a while Dennis regressed .He would sit in one place the whole time and he lost the one word he had learnt.

However slowly he started improving again with a combination of both physical and diet therapy.  I learnt about the casein and gluten free diet that the class was following and also started following it strictly at home. Dennis started making eye contact, stopped his habits of repeatedly banging the table and spinning continuously. After that Dennis started saying three words at five and a half and was soon talking fluently.

Dennis at eight years old

Now Dennis can speak three languages, English, Kiswahili and Kikuyu.  He can also chew his food. He could not chew until he was 9 and everything had to be mashed for him. He is also more tolerant of noise. He used to cry in vehicles because of the hum of the engines.

Dennis can also now read and is aware of his environment. He threads beads to increase his concentration and he can now sit through an hour of this. He can also draw. He likes the overhead electricity grid and for sometime that is all he wanted to draw, but his art teacher has succeeded in introducing him to other subjects. He is now in standard two at a regular class. Playing foot ball, rope skipping, and riding bicycle are his hobbies. All these are great feats for him even though he is already twelve years old.

Dennis still has a lot of challenges. He still does not mix much. He likes routine and we always follow exactly the same route to school otherwise he will throw a fit and refuse to move.

Even though some doctors dispute the efficacy of the casein and gluten free diet for autistic people, I can testify that it has worked wonders with Dennis. It calmed him down and he does not have to take drugs which made him dull and sleepy all the time. Casein is found in milk and gluten in wheat. These used to make him very hyperactive. I also checked on other offending items such as sugar by cutting them out and reintroducing one by one and checking for the reaction. If Dennis for example is given a soda or a sugary drink, after 10 minutes he will be overactive.

In addition to various recipes I have come up with, I mostly use Recipe book for Autistic people written  by Recipe book for Autistic people written  by Felicity Ngunyu who raised her autistic grandson and greatly campaigned for the cause of autistic children in Kenya.

It has been very difficult to go through all I have gone through with my son. After I realized the nature of his sickness I was traumatized. I became depressed and was in denial for three years. I never saw anything nice in life. Sometimes I did not even want to see anybody laughing and withdrew from friends. I cut my hair quite short and got a bit sloppy in my dress. Acceptance comes after a long struggle. I have learnt the importance of a supportive family. Mine have been there for me all through and so have a few friends who drew me out of the depths of despair, where all life revolved around my problems. There are times you want to have somebody listen to you and encourage you because it is a hard, long journey. For mothers like me, it is a full time job taking my son to and from school and providing care at home. It is very difficult financially. Though I have a salon, I find very little time to attend to my customers. One thing is that I have never regretted having Dennis and praise God because He must have had a reason to give him to me. I believe he did this so that his name is glorified. I have seen His grace and mercy because at all times I have depended on Him and not lacked, even when I am very low financially. He has put kind people along my journey including the therapist, the school in Lavington and my patient landlady. It is a miracle how I always get enough to help me through my basic needs.

I take Dennis to Sunday school and sit with him. I do not attend regular services with him because he cannot stay in one place and people do not understand. They think that for his age he is manner less. Visiting other people with him is also not easy. I would ask parents to love their children with special needs unconditionally and seek out places where they can be helped. The society should also not stigmatize or harass autistic and other disabled persons but embrace and support all affected. They need to be sensitized so that they do not live in ignorance of such conditions. The government should also become more involved in providing care for those with disabilities.

It is very expensive for parents to provide the required therapy for autistic children and they need to be assisted.  There should be programmes to provide  supervised homes for people who can be semi- autonomous like Dennis -where when they are grown and able to get jobs, they can return to after work. This is because mothers and loving parents will not live forever and need to have the peace of mind that their children will be taken care of.

This article first appeared in the June--July 2010 issue of Woman of Faith magazine. Copyright Woman of Faith Magazine. All rights reserved. For comments write to This e-mail address is being protected from spambots. You need JavaScript enabled to view it